My Oh My Multiple Myeloma

Saturday, February 6, 2010

I find that when things get a little crazy, I hunker down and avoid the outside world. Silly, I know, because these are the times I need my friends the most. At my job, I am working with a very supportive group of educators. I’m working on learning the school attendance and grading programs. Junior High kids are a lot of fun. They are at a unique time in their lives. Regarding the radiation – it must have done it’s job, because the pain in my tail bone has gone away. I still experience weakness in my legs, however. I’m only 4 weeks out in a 6-8 week recovery period. This Monday, I have an MRI that will give us more information. My February visit with Dr. Wolf in San Francisco was pushed back to March. I hope we know more about this leg strength thing. I’m still going off the steroids very gradually. My main issue these days is energy. I need a great deal of energy to teach. I covet your prayers for strength. I’m pretty focused on teaching and grading papers!

Wednesday, January 20, 2010

What a great day! I spent the full school day at my new assignment, Kastner Intermediate School. We started at a staff meeting where I saw many friends. I was introduced by the principal to all the teachers. During the course of the day, I was able to observe each of my classes with their American History teacher and in their English class. I will be teaching the English/Language Arts curriculum. The students know their current teacher is retiring and that I will be starting at the semester break. I’ve spent several days on campus, so the students are becoming familiar with me being around. This time before I start is so cool because I can visit the other teachers’ classroom and observe their teaching and management styles. Once I start full-time in my own classroom, I won’t have that opportunity.

The eighth grade teachers I work with are a great team. They have been very welcoming. We all went to Rubio’s for lunch. One of the teachers has a cabin at Huntington Lake, just across from our “resort,” Lakeview Cottages! She asked if I had seen the article in the LA Times, I said yes that’s us! I felt famous!Link Here

In between visiting the classrooms I was able to meet with my Learning Director (my direct boss), photo copy some information, work in the cluster office, get Friday Spirit shirts, and become familiar with the campus. Everyone has been very kind and helpful.

At the end of the school day I waited in the office for Jessica to pick me up. I’m carpooling with Jessica because she is substitute teaching and is on the same schedule as me. While in the office, the principal loaned me the books for our discipline policy, and I got to visit with the office workers. I am so excited to be at Kastner. I had plenty of energy, and even though I have some mobility issues, I know I’m ready for the job. I believe that God dropped a huge blessing in my lap, and I couldn’t be happier!

Monday evening, George and I packed up Jessie’s VW and headed off to San Francisco. I felt so much better than I did the last time we made the trip. That was the trip when I was admitted to the hospital for 3 nights. We met with Dr. Wolf and one of his practicing doctors. So here’s the scoop.

Dr. Wolf doesn’t really like the terms remission (no indication of cancer cells) and relapse (cancer cells detected). Remember that with Multiple Myeloma a patient is not cured, but rather you manage the cancer for the rest of your life – which for me could be 20 more years. After the Stem Cell Transplant, Dr. Wolf indicated I still had active cells in the thecal sac (tail bone area). Since that is a major nerve site, I developed severe pain and lost strength in my legs. Over the holidays I had 12 sessions of radiation aimed at the tailbone area. Now it takes 6-8 weeks to heal from the radiation and to see if we got the bad little buggers. I’m at 2 ½ weeks in that healing process now. I have an appointment with Dr. Wolf next month at 5 weeks. He wants to see an MRI then, so hopefully we can see if there is any or no growth. Sometime soon I will start the management chemo which is a low dose chemo tablet taken regularly. The chemo pill has few side effects and shouldn’t disrupt my teaching or other activities.

My Fresno health team is great. I have an oncologist, a radiologist, and a clinic full of happy, professional nurses and workers. Dr. Wolf, at UCSF, is the leader in knowledge and new treatments for Multiple Myeloma. I am so blessed that I get to be part of his patient load. It was so good I was referred to him. We will see him present at the Leukemia & Lymphoma Society Conference in San Francisco next weekend. We will be visiting both a friend we met by blog and with Susan’s cousin. We should have a good time. I feel well taken care of!

Friday, January 8, 2010

My original Fresno Oncologist is leaving the St. Agnes Cancer Center, so I have chosen to stay with the group. I love the staff there – everyone is so nice and professional. I chose a new doctor - Dr. Hackett. He has experience with Multiple Myeloma – a real plus. I meet with Dr. Hackett on Monday, Jan 11, then we drive to San Francisco to See Dr. Wolf on Tuesday. George and I have learned a lot since May! We are much more active about my care. I have learned that I need to keep copies of all documents and tests. I carry everything in a binder and sometimes my copy of things is the one readily available. I’ve also learned to get all the doctor’s e-mails so we can keep everybody in the loop. When I was in UCSF Med Center for the weekend, I started taking Dexamethazone 16 mg per day. My Fresno Doctors noticed that was a large amount to still be on and I needed to cut the dose back. So there was a plan for getting on the drug, but not one for getting off of it! You should see my face, it is so puffy from the steroid! So please think of us as we drive to San Francisco next week. George is a trooper about driving me there – I’m glad he likes San Francisco because we’re spending a lot of time there!

George did a really good job of explaining the whole radiation program. I met with the Fresno Radiologist the next day after we returned home. I had 12 sessions aimed at my tail bone. I went in on Christmas Eve and New Year’s Eve. Everyone at the St. Agnes Cancer Center was so nice – I really felt cared for. It was also neat to network with the other women patients. Most of the patients had breast cancer, I was the only one I met with Multiple Myeloma. Yesterday, Thursday, Jan 7 was my final day. What I didn’t realize about radiation is how much it takes out of me. I have NO strength! I cannot step up a curb unassisted. I cannot step my leg into the passenger seat of a car. I can’t see or feel the connection between radiation and strength loss, but it is clearly there. The radiation folks say it will take 6-8 weeks to regain my strength. I am starting back teaching full time in two weeks! Yikes! Calling all prayer warriors!

Monday, December 14, 2009

Myeloma patients take note: Multiple myeloma is a unique cancer and you will not be well served in your treatment decisions if you do not allign yourself with a doctor who specializes in treating myeloma.

Sue was referred by her regular doctor to a very nice cancer doctor in Fresno. That doctor, an oncologist without experience treating myeloma, upon properly diagnosing multiple myeloma, referred Sue to Dr. Jeffrey Wolf, a specialist in treating multiple myeloma who is practicing at UC San Francisco Medical Center. That referral was the best thing that could have happened under the circumstances.

There are a number of reasons why I say it was the best thing. Foremost among them from my perspective is that I have enjoyed these all expenses paid vacations to San Francisco. Foremost among them from Sue's perspective is that Dr. Wolf really knows multiple myeloma. As a bonus, he's a pretty nice guy.

Sue has talked to at least six hematology/oncology doctors in the past ten days about the pain she is experiencing. About ten days ago the Fresno oncologist misdiagnosed Sue's pain as osteoarthritis and prescribed Vicodin. The pain persisted and increased, and Friday Sue paid a visit to Dr. Wolf. He immediately hospitalized her and ordered a new MRI. The new MRI showed inflamed nerves (nerve roots) radiating out of the thecal sac at the bottom of the spinal cord (in the sacral area near S1, S2, and S3). As I understand it, the thecal sac is like a, well, a sack, that surrounds the spinal cord. Several doctors from this hospital stopped by Sue's room to discuss the inflamed nerves and possible causes. But none of them were certain of the cause.

Enter Dr. Wolf. He was off Saturday and Sunday but back on the job today. Apparently unknown to a lot of people, even medical professionals working in the bone marrow transplant/stem cell transplant department of a major regional teaching medical hospital, was this important, arcane fact: Chemo therapy can kill all (or mostly all) of the myeloma cancer cells in your body except in two "sanctuary" areas of the body. Those are: (1) in testicles; and (2) in the thecal sac. Thus, and particularly in regard to the area inside the thecal sac, the blood tests may show the myeloma to be in complete remission (CR), but there can still be active myeloma cells within the thecal sac.

Dr. Wolf is quite certain that is what is happening with Sue, and that it completely explains her recent symptoms. Further, the only way to treat these cancerous cells within the thecal sac is with radiation. Fortunately, the radiation will be carefully directed to cause minimal tissue damage, and the nerves can practically take unlimited radiation without damage, while the myeloma cells are very sensitive to the radiation and should be totally eradicated by this treatment.

Sue is now (circa 2 p.m.) undergoing the PET scan which will show Dr. Wolf where all the live colonies of cancer cells are within the thecal sac. He will then be in direct contact with the radiation oncologist in Fresno to indicate what needs to be done. Sue is being discharged this afternoon and will be going back to Fresno with me today. She'll start radiation therapy in Fresno as soon as possible.

Once again, our thanks go to all of you for your prayers and concern. Additionally, special thanks to Jerry, Ermintrude and Pat for your comments on the issues of radiation and PET scans. I raised your concerns with Dr. Wolf. Pat, you are correct that the PET scan is the only way for Dr. Wolf to identify where the cancer cells are clustering. Jerry and Ermintrude, this radiation will be very directed and, for better or worse, it is the only way to kill myeloma cells within the thecal sac.

Sunday, December 13, 2009

Today was another cloudy and chilly day in San Francisco, but the rain stopped and the sun came out in bits and patches. Chilly with patches of sun, but not real warm sun, kind of describes the day in all it's particulars. Our blog buddy, Becky L, warned us early on after the myeloma diagnosis to hang on because this would be an up and down ride. Well, Becky, you were right.

Sue was napping this afternoon and I was bored from being cooped up in a tiny hospital room while the City was doing its Sunday thing, so I decided to take a walk. I walked west on Irving to 9th Avenue and encountered the Thai Noodle Cafe. There's nothing like a big bowl of steaming hot Thai suki-yaki soup (not to be confused with Japanese sukiyaki). Matched with hot sake wine and soft Thai music, it'll take the chill off any day. It'll melt your stress and put you in a meditative state of mind. Or is that a medicated state of mind? Oh, never mind. Moving on.

I bought a Starbucks cranberry bliss bar on the walk back to appease Sue and got back to the hospital just in time to hear the latest from the on-duty doctors. Sue's midnight MRI Friday night revealed inflamation in the nerve roots (the area where nerves leave the spinal cord) in her lower back (regions S1, S2 and S3). This inflamation extends out on both sides of her sacrum, and is the probable cause of her back pain and the probable cause of her muscle weakness in her legs and the probable cause of the increase in her neuropathy. The good news today was that there is no evidence in the MRI of a fractured bone and it does not appear to the doctors that Sue's symptons are resulting from a tumor or myeloma cell mass pressing on Sue's spinal cord.

There are a host of possible causes of the inflamation of the nerve roots, and some of those are not good. Well, they're all not good but some are worse than others. Some of the possible causes which have been discussed are: (a) the nerve damage is resultant from the Velcade (that's the same awful chemo stuff that caused Sue's neuropathy, but which also killed a bunch of the myeloma cells and stopped the original back pain); (b) a viral injury, possibly related to the shingles which attacked Sue a couple of times during her chemo treatments; (c) possibly the myeloma is acting up again in that localized area; (d) some of the lesions which occurred in Sue's pelvis and sacrum prior to chemotherapy treatment could be implicated. The doctor used some words I wrote down but couldn't understand or spell well enough to google. I thought he said something like "gimbray syndrom" but he dismissed it immediately as just talking out loud, so I left it hanging in my note book like a dangling participle.

The other good news is that, for now, the extreme pain Sue was experiencing is being controlled, they are treating the inflamation with steroids and that appears to be working, and they are continuing to investigate to find the cause of this new problem. The bad news is that Sue's not going home tomorrow, but I probably will. The other other bad news is that this guest chair "bed" they let me sleep on in Sue's room is killing my back. I'm going to have to apply to get some of Sue's pain medication if I have to sleep on this goofy thing too many more nights. Sheesh. Grand Hyatt king one night and couch rat the next. Like Becky said, up and down.

The doctors here have not ruled out radiation therapy. The plan is to put Sue through more tests tomorrow, including a PET scan (that's Positron Emission Tomography). Dr. Wolf is going to be around and back on the case tomorrow. We like Dr. Wolf. He's as comforting as a sheep's wool sweater on a chilly San Francisco day. Hmm. Maybe alpaca?

April 30. 2009 I was diagnosed with Multiple Myeloma. This blog is to keep my friends and family updated. If you have comments, advice or even questions feel free to comment! Comments have been enabled even for people who aren’t BlogSpot members. Just choose the anonymous option!